2025 - The Critical Need to Address Mental Health in the Rare Disease Community

Patients and caregivers navigating rare diseases often face emotional strain as significant as the physical symptoms themselves. Despite this, mental health support remains largely absent from the standard of care. This webinar presents new findings from a 2025 survey examining the psychological toll on individuals affected by rare conditions.
A total of 958 respondents participated in this survey, including 78% patients and 22% caregivers. Participants represented diverse demographics: 82% female, 52% aged 35–54 and a broad income range (approximately one-third earning under $50,000 and 28% over $100,000 annually). The majority identified as White (86%), with 5% Black/African American and 5% Other or mixed race.
The featured speaker will discuss survey highlights and why integrating mental health into rare disease care pathways is essential. Attendees will learn about key unmet needs, access barriers and how community-based support can drive resilience. The webinar will also examine the role of advocacy, healthcare and industry in shaping more holistic person-centered models of care.
Register for this webinar to learn how addressing mental health can improve quality of life in the rare disease community.
Keywords: Caregiver, Clinical Research, Clinical Trials, Drug Development, Mental Health, Patient Advocacy, Patient Engagement, Patient Recruitment, Rare Diseases/Orphan Drugs, Therapeutic Areas, Translational Research